Monday, June 30, 2008

Well....

Tonight Sean finally lost his hair! Well, he didn't lose all of it, but it was coming out in clumps, so he decided to shave it the rest of the way. (Really fun photos coming soon!). Sean has finished 11 of the 15 WBR treatments already! I would say he is still feeling great, but unfortunately he came down with a cold the other day and its starting to bring him down a bit. So far our summer has been going well, we have spent many days outdoors, cooking on the grill, hanging out with friends, and letting the girls run about. Anyways... I will update SOON with photos, so stay tuned in for the next couple of days!!!

~nicole~

P.S. Tomorrow I will be getting my stitches out from my biopsy and hopefully I will also be getting the results from that!

Monday, June 23, 2008

6 down-9 to go!

Wahoo! Sean has done 6 treatments so far and he has been feeling great! He virtually has had no side effects from the radiation so far... He has been on steroids to help prevent his brain from swelling while doing radiation, and he has been eating so much because of them! That has been a good side effect for him, as he has gained 5lbs! He feels good for the most part, he continues to become stronger, and we are just living life... Sean's dad, Marty, has been staying with us now also to help out. It has been nice having another person around helping out (like, our lawn can actually get mowed now : )! Also, the girls just love him, so they have been having a ball being able to spend so much time with him. Today, I had a mole of my own biopsied. I must admit, I was scared! It hurts quite a bit right now, but I think it is because I can't keep my mind off of it and every time I move it pulls on the stitches. ouch. I should be getting the results from it within a week. Hoping for some benign results! On July 11th, Sean will have his next appointment in Chicago and we will probably figure out the NEXT plan of action... Please keep the prayers coming, thank you all so much! ~nicole~

Tuesday, June 17, 2008

2 down, 13 to go.

WBR treatments that is... Sean began whole brain radiation on Monday. So far, side effects have been minimal, but they are known to accumulate, so he probably will not be feeling as hot by the end of the week. Sean has been feeling good, other then the fact that he has had hiccups since Sunday when he started the Decadron. He will have a total of 15 treatments, one each day Monday through Friday, having the weekends off. Well, thats all for now, if anyone has any questions about anything, please do feel free to ask! Sometimes I forget that sometimes you all may have no clue of what I am talking about... Please keep the prayers coming! ~nicole~

Thursday, June 12, 2008

Whole Brain Radiation it is...

Okay, after much research, consultations and everything in between, Sean's best option seems to be whole brain radiation. Which sucks, but we are dealing with it and we need to get the ball rolling! I am definitely scared of this treatment and the side effects that may come with it... so for now, I am trying to stick with the positive. Things Sean has going for him that may help minimize WBR side effects are that he is young, his karnofsky score* is descent, he seems to be getting stronger and stronger each day and his lung seems to be stable. He is not to worried about the hair loss symptom (I think he like sporting the bald look after chemo-bald is beautiful!). Our hopes are for him to get this WBR done and behind us and he will possibly start MDX-010 shortly after. Thanks everyone who have been thinking of us. I will let everyone know when we know when Sean will start WBR. ~nicole~

*The Karnofsky score is another method which measures patient performance of activities of daily living

Monday, June 9, 2008

change in plans maybe??

I have been in contact with the Gamma Knife specialist in Midland, we have actually spoke with each other quite a few times now! The plans were, for Sean to start whole brain radiation this week. But.... Sean now may still have the chance to have Gamma Knife instead of whole brain radiation. Gamma Knife doesn't really involve a knife, it is actually a type of radiation. With Gamma Knife, doctors are able to radiate only where a tumor is, without damaging surrounding tissue. The thing with Sean though, is that he has multiple tumors (counted 14), and if they do gamma rather then whole brain radiation, then he risks the chance of many more tumors popping up. Usually the maximum tumors they will treat with gamma is 6-7, but we are hoping that the neurosurgeon will go above and beyond and give Sean more then just the standard of care. Gamma knife has its risks, but after MUCH research, whole brain radiation seems to have more risks, particularly with the side effects of possible dementia and long lasting fatigue. On Thursday, we will be heading over to Midland, Michigan for Sean's appointment with the neurosurgeon (gamma knife specialist). We will discuss Sean's options, whether they are willing to give Sean a chance with gamma knife. If they do decide to do gamma, we will stay in Midland Thursday night and Sean will have gamma done on Friday. (The other plus, it is only a one day treatment). Please PRAY, keep your fingers crossed, whatever you can spare, we need all we can get this week! I will definitely try to get in update in after our appointment on Thursday to let everyone know what is going on, thanks for keeping us in your thoughts! ~nicole~
P.S.~ here is a link to a site about gamma knife that describes it fairly well if you would like to read... http://www.virtualsciencefair.org/2006/cham6m2/how.html

Tuesday, June 3, 2008

Overwhelmed!

Overwhelmed... that is the exactly how I feel at this very moment! Okay, update on everything-> Sean had his appointment down in Chicago last Friday. We found out there that Sean does have to many brain lesions for Gamma Knife, so Dr. Richards recommended whole brain radiation (WBR). Whole brain radiation (WBR) sounds so scary to me! Dr. Richards did explain some of the risks with WBR. Sean definitely has the benefit of being young and semi strong, as the risk of anything serious becomes a bit less. Sooo.. this Friday, Sean has an appointment here in Fremont with Dr.Orourke- which he will more then likely start WBR next Monday. The oncology office over there is wonderful, and they are already working on what they can to get that set up. As long as it is set up through Dr. Orourke's office, Sean will be getting radiation in Muskegon. Whole brain radiation is usually 2 weeks long for everyday, but weekends, so we may not be traveling as far, but now we have to travel EVERY day! blah. Usually during WBR, the patient (Sean) is put on steroids (Decadron) to help lessen or prevent swelling. We will be returning back to Chicago in a couple weeks also, which then, as long as Sean is off of steroids for at least a week-- he may start the ipilimubab (mdx-010, anti-ctla4) treatment! We know that his lung still seems to hold stable, but we would like to attempt more then just stable, and try for some regression of that mass.
This weekend, some friends and family held the benefit for Sean to help with medical, travel, misc. expenses... It turned out to be more then I thought it could ever be! It was held at Leighton Hall, and the hall seemed to be full the whole time! We had a pig roast, chicken bbq, games, auctions, clowns!, all sorts of fun things... A special thanks to Fondaleette (my mom), Kelly (Sean's mom), Mrs. Sharon Escalante, and Mary! Thank you so much for organizing this and for putting what all of you have into it! There were sooo many individuals, companies, corporations, and so on that have helped, I honestly do not even know where to start to thank everyone! I am so glad Sean was feeling well enough to be able to attend, I know it was great for him to be able to spend time with so many friends and family, especially the ones we have not seen in years! Thanks again everyone! Soooo... On our way to the benefit, since we have the best luck ever and all... I was driving down the road (Sean was with me) and all of a sudden, our tire decided to basically fall off--ok, so it was still attached, but it was on sideways?? I am not sure how to describe it... anyways the ball joint snapped and we were not able to drive it any longer. We came pretty close to smacking right into a a sign since i had no control of the car, fortunately it stopped just a couple feet from it! Thanks to a great friend of ours (Dan), we were able to get it fixed quickly and cheaper then it could of cost us! Thanks Dan, your awesome!
Right now I am having a little scare on my own.. I was finally able to make it to a doctors appointment for myself to have a mole that I have had for a long time checked out. The doctor said it looks a bit suspicious and would like to have it biopsied. : (. I have never had a biopsy myself, I am horrified! and not just horrified of the biopsy, but the outcome of it... the fear of knowing what could happen if I to had to deal with melanoma. The chances of it being melanoma are more then likely slim, but possible. I will have it removed on June 23rd, so please, please, everyone wish me luck! I am sure it is just nothing.
Sorry, this post has become more of just babbling, I am not even going to proof read it right now, so if all of my sentences are funky and I have a million misspelled words... oops. I will try to update soon, it has just been so hectic around here! ~nicole~